Pain, Fashion, This Girl

PAIN

For the month of September, I have reversed my usual blog order. Considering that my surgery is going to take place on September 25th, I find it relevant to be ordered as follows: Pain, Fashion, This Girl.

Below, you will find an interview from a fellow friend and chronically ill person who gave me permission to answer her questions publicly on my blog. But this amazing, strong girl wasn't sure if she wanted to be anonymous or not. She decided to make her name public, with no pressure from me. This Interview was conducted by Brenda Hankins. She wanted answers to about how I deal with my health issues, because honestly when your body isn't feeling good your mind isn't feeling great, and we need support. When this blog posts, it will be the first time for her to get my answers. I know this has been a long awaited blog and I am happy to be as raw and honest with you about my journey as I can. Since Brenda sent me these questions, and I asked her if we could present it as a type of interview on my blog, she came up with her own blog called http://ourinvisibleworld.wordpress.com/.

Interview

All my responses will have -R to start

Hey girl  I was wondering if you have any advice about being public about your health issues.
    

-R: My first bit of advice would to be confident in yourself and your journey, and as you are the only one that has experienced it, and there is no right or wrong answer. But also be prepared that you might not have all the right answers to questions that pop up, and allow yourself to be okay with that. Also, come to terms that random people will start coming up to you and talking about your sickness. This can be really hard, especially if you are having a difficult time that day. I've broken down into tears a few times, but allowed myself to reply by explaining today is not a good day to talk about it. I would also suggest that you have lots of research under your belt before you start being public. If the reason that you are being public is to inform people, you want to make sure you have the right facts regarding your illness.

Were you nervous about it at first? 

-R: I really wasn't nervous at first. However, the longer I was sick the harder it got. I expected to go back to my normal life within a couple months. So actually to answer your question, I am more nervous now about being public because I don't have my normal life back, and I think I led people to believe that eventually I would be cured forever. More than anything that thought has let me down, and probably others as well.

What inspires you to be public? 

-R: Awareness. Point of View. To help others that are fighting the same battle find a link to getting better quicker and the best way possible.

What things do you keep private? 

-R: Just intimate details about how my sickness has effected others around me. I don't feel like it will do any good to mention a situation or someone that is having a hard time with my health issues. I think I should share how I feel, or how a doctor feels, but not how my friends and family feel, and their response to certain situations. I have learned that ultimately whatever it is, that it is my choice and they can be a part of the conversation but they can't call the shots. 

I really need to just get on disability but I keep thinking MAYBE I'll be able to just work again and so I don't think I want my future employers to read about my health stuff. It's hard for me to be vulnerable in general.... 

-R: I understand where you are coming from, and I don't know what type of job you are looking for but most of them, don't ask about your health. In some situations, it's illegal for employers to ask about those details because of insurance and such. Remember that you don't have tell your employer about your blog or your posts on the internet.

I also wanted to say thank you so much for telling me to never give up on love and sharing your story about Brian with me. It had an impact on me as well as my friend who has a happy marriage despite her illness. Do you have any advice about how Brian and you deal with your relationship and illness?   

-R: It might sound silly but sometimes, but it feels like Me, Brian, CSO and lupus are in one room. We had to learn how to remove the disease from the relationship. So most of the time we don't do much but we find common ground to do things together, like when we watch a movie, play a game, walk our dog, read a book together, or play music together. Somedays it's just being able to have a meal together and enjoy doing it. It depends on the illness on what you can do, but we have found that for us it is very important to have weekly personal rituals as a couple. Also, we have a code word if I am somewhere and I want to leave because I simply don't feel well; Brian comes with full understanding with this word no questions asked. We also have to remind each other that we are always on the same team if we get in a tiff. There are lots of variables that go into a chronically ill relationship. The biggest thing that has helped us to grow, despite how awful I feel or he feels, is that we pray together every night. Some nights I pray, other nights he prays for us, and other nights we both pray. For us it is important to be as mentally, spiritually, and physically healthy as we can be day by day.

I know you can work part-time on disability and also just receive supplemental income.What is your experience?

-R: Apply for disability ASAP. You only will get it if you have the right amount of work credits, so the longer you are not working, the higher the chance you won't get disability. In my case I'm appealing with a lawyer because my diagnosis was made clear on a certain date, and I have the documents to prove it. However, it's a lot harder to get on disability than I thought. I'm unable to get SSI because I am married and my husband has a steady job. All of this is effects your funding.

I forgot to mention my illness has a big stigma /preconceived misconceptions attached to it - that  
makes me not want to share about it. Do you have any advice?

-R: I think that you should not back down because of a stigma. I think this gives you more reason to stand up to it because you are living it. A lot of the people making these stigma's haven't ever had your illness, so how would they know? I think this gives you more reason to share. Just because someone thinks you look healthy doesn't mean that you are. I have my good and bad days. When I share I like to use this phrase that I made up, "You might not agree with everything I have done, or tried out, or what I write about, but it's my journey & that is the very reason why it's interesting."

What type of haters have you received? 

-R: Honestly, my biggest critic is myself. I know that people might be annoyed if I post something something on social media that seems to be calling attention to me or my disease, but no one has ever called me out on it. I find sometimes that my close friends and family get frustrated if I can't do things that they expect me to be able to like drive, or go somewhere, but they never blame me or hate on me.

If so, how do you respond or how would you?

-R: For my friends and family, I have learned to make it very clear that I have to take it hour by hour. Sometimes I can do something but I cannot be sure until the last minute, and I tell them that. Also if I have plans to visit someone or vise versa, I always let them know that it is my intention to do so unless I feel bad, and I can't control how my body feels. As for myself, I have learned more than ever that I need to be more spiritual and make God the center of my life. I do yoga, and go to therapy to talk about my chronic illness. But if I had haters online, I would not respond to them; it's a waste of time that will just lead to frusteration or tears. Sometimes people will turn around and actually see that you are going through a hard time, and they change their attitude towards you. Regardless, whatever we do in life, people will find a reason to turn it bad. Just brush that off. It's like the earlier years in my life. I would run to read the runway reviews. Sometimes people didn't like my designs and that's their opinion, and there certainly intitled to it. I don't run after them and explain why they should like them or ask them why they don't. It is what it is.

Brenda ended the conversation with this note:

 "I'm so glad you consider my questions heaven-sent. I think the topics in my questions are very relevant for both you and I."

Here are some links that Brenda Provided that are helpful for those who are caretakers, or friends/family of someone that is chronically ill:

http://restministries.com/2012/05/ways-to-encourage/

http://www.bandbacktogether.com/how-to-help-a-friend-with-chronic-illness/

This is a video my husband made about me and my illness: CSO and Autoimmune Disease

We are so fortunate to have reached our fundraising goal, to help pay off past and present (mostly) medical bills. If you would like to help us reach past this goal, please go to It's Times Like These We Learn 2 Live Again.

FASHION 

Before we get to the September Issue, I want to share a new idea that we have made to spread CSO awareness. It's called "I MAKE MY OWN FASHION RULES. I WEAR WHITE AFTER LABOR DAY TO SUPPORT CHRONIC OSTEOMYELITIS." Please send your photos to me by text, e-mail, FB, or twitter. Then dare your friends to do the same. The purpose is to have a conversation starter and spread the word about this and other illnesses. If you want to be apart of TEAM RACHELLE on FB, please let me know. Here is a picture of my mom kicking the foundation off with a bang! 

My mom wearing white after Labor Day to spread awareness for CSO.

The September issue's are out, and if you are a fashion lover you know what this means. We get to see all the trends that hit the runway for fall and winter 2014/2015. I received 10 free magazines in the mail that I received with a purchase online.

I'm already writing a breakdown of Trends and the Pantone color report on my next blog. It will also feature my my #1 picks for the season!

Biggest Trends: Game of Thrones inspired clothing, natural fibers, color, 90's, boots, nail art. 
Tip: Express has stepped it up this season with clothes that are savvy for reasonable prices. Especially if you get the coupons! I'm very impressed with the Express Fall/Winter Look Book!

FASHION ALERT TO SAVE MONEY AND WEAR NEW THINGS: It became apparent to me that there is an easy way for us ladies to save money, not spend money, and stay fashionable. What is it? To swap clothes, shoes, accessories, etc... I found that it is easiest with me to do this with my mom because I trust her with my garments, and vise versa. We happen to be about the same size so it works out great. Ladies consider this! Even if you can't share clothes, there is a good chance you can swap accessories like purses, scarfs, shoes, jewelry, outwear, hats, gloves, etc... and it will look like you have a whole new wardrobe. Every time I wear my mom's stuff, people think my outfit is new. This very apparent epiphany came to me because of my medical situation right now, I'm unfortunately unable to design my own clothes, nor do I have the funds to buy them. I think this is the perfect alternative to update your wardrobe! I decided to put my mom to the task. I borrowed some pieces from her closet and wore them, and then asked her to wear them (I never let her see how I put my outfits together), so we have 2 completely different ideas and age perspectives. These are clothing pieces that you can wear in your 20's to your 60's.

This is not a column about about age, or a who wore it better, (even though you might have those thoughts in mind). But this is Fashion Fun For Free! It's I Share With You, and You Share With Me. Here is a picture of our first experiment. 

THIS GIRL

The season of my life calls for me to recognize all the big and small reasons to be happy. Here is a example of a small thing called to my attention from "The Book of Awesome" by Neil Pasricha (author of 1000awesomethings.com). 

I love this experience every time it happens because it makes me laugh and forget about life's troubles.

It is, Catching somebody singing in their car and sharing a laugh with them:

 "It's late, it's quiet, and you're stuck at a red light. Casually, you glance to your left and notice a muted explosion of furious head bopping, furrowed eyebrows, and silent wiling inside, as the driver rocks out alone and in the zone. 

Ane there's just something worth smiling about when you observe that passionate display of pure private pleasure only a few feet away. Suddenly you're the producer in the booth watching your struggling artist hit the high notes in their tight sound chamber on wheels. Yes, they've tried for years to get clean and make it off the streets, but now you're finally smelling a hit... and a future.

So maybe you bop along for a few beats, catch the same song on your radio or lock eyes with them for a secondhand share a warm and heartfelt laugh. Maybe you feel a tiny flip in your heart as you connect with a total stranger for a few fleeting seconds. And maybe it makes you a tiny bit happier and maybe you smile a tiny bit more." 

I think that's awesome. I'm definitely the driver who locks eyes with the person singing and smiles. I am sometimes the one who's caught singing and breaking out dance moves at a stop light, thinking no one was watching. Life is full of surprises each and everyday, you never know what make the tiny flip in your heart.